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This post is about chronic pain, plain and simple. I’m not looking for sympathy, neither are those who share my condition. Just looking for understanding, respect and tolerance.

I never ever thought I would be “one of those” people who had to tolerate pain in one or more parts of their body 24 hours a day, 7 days a week. Yet, here I am. My feet are “riddled with arthritis” as my orthopedist told me. Also my knees. Osteoarthritis. An interesting diagnosis, I thought at the time, surely there is a cure. No, he said, only pain management. “Pain management”? Okay, then give me a pill and let me go back to my life, I thought. I wasn’t yet aware of how much my life was about to change.

I tried several different pain medications, injections, etc. and none seemed to keep the pain at bay for very long. And, in the beginning, it was even “that bad”… more of a nuisance than a driving force. I might limp while going to the grocery store, or shudder at the thought of crossing a large parking lot. I obtained a temporary handicapped parking tag with the intent of turning it in after a few months and I got the pain under control. The months lagged. I kept asking for a renewal from my doctor each time the expiration came due on the tag. I figured, surely by the time THIS ONE expires, I’ll be able to walk better and longer distances.

Last month I had a bi-annual checkup with my primary care physician. I asked for the permanent handicapped parking tag. He looked at me and winced. He clearly did not want to go that route. Indeed, he told me if he gave me the permanent tag, that I might start thinking of myself as “handicapped”… and he didn’t want me to do that. And he forbade me to use the electric carts in stores. However, he did give me the new tag. Neither of us was happy, but I have to be realistic. The pain, especially in my feet, was now unrelenting.

I think I finally came to grips with the fact that I will have to live with chronic pain for the rest of my life. There is no cure for osteoarthritis, and it will, in fact, only get worse. I would soon get used to measuring my activities by the amount of pain I am currently in, or am likely to be in at the time of the activity. That probably sounds pretty unbelievable to most of you reading this. My life is now measured by increments of pain. It makes sense, considering 90% of my particular pain is in my feet, making it very difficult to walk. My knees are secondary, and 3 herniated discs in my back count for something as well. I’m always looking for “shortcuts” to my activities. Can I get dropped off closer to my destination? Is there comfortable seating? How close is the seating to my drop off point? Are there stairs? Hoping for a ramp. Will I need my “cane” (my father’s wooden shillelagh)? Will there be lots of people to stare at me, and judge? Will there be people I know there, who do not know of my hidden secret? Will I have a lot of explaining to do? What if it just hurts too much? What if I just can’t stand it another minute? These are things that run through my mind any/every time I need to go outside my home. Yes, even when I go to work. So, admittedly, my social life is waning.

People with chronic pain think way differently than you do. And granted, even though my personal pain is considerable and distracting, there are so many others that are way worse off than me. They are my heroes. I know them and feel their pain as I do my own. Chronic pain “people” do not stand out in a crowd. You cannot look at them and know there is anything wrong. And they (we) do not like to share that information with anyone. If shared, there is always skepticism. People say things like: “Suck it up,” “C’mon, it can’t be THAT bad,” or “You’re just faking it.” No one wants to be held up to that kind of ridicule. Or they’re look you up and down as if they’re going to see some clue as to whether or not you are really in pain. And when they see no clear evidence, there is disbelief.
Chronic pain is exhausting. On a “good day”, at home, I might get one or two chores done ~ dishes, laundry, vacuuming. On a “bad day”, I cannot stand. I sit in my recliner with my feet up, take aspirin, and feel them ache and burn all day long. If I need to get up, I have to thrust myself to standing, then wait until my feet give me permission to move, to shuffle to my destination and then back to reclining. The entire episode is unbearable and to be avoided at all costs. Sometimes I use a prescription rub-on gel to curb the pain, but the side effects are not worth using it constantly… only when I really cannot bear it. Restraint is an important lesson. Chronic pain alters your mind. Your priorities change or may be clouded. You don’t think right when you hurt. Have you ever had a migraine, or a sprained ankle or any broken body part? Think of that pain as never ending. It will be with you for the rest of your life. No healing, no getting better. At first you just deal with it and don’t really believe it will be forever. Then it becomes a “normal” part of your life. It’s with you every day, all day, just like your pinky toe. Then it gets worse and you’re thinking desperately. And you imagine what it would be like to be pain free… just only for one day, even if just a few hours. How glorious would that be? Chronic pain makes you think irrationally. It gives you feelings of desperation, depression, worthlessness, dependence. ALL. THE. TIME. Do you even get that? There is no relief. Hence the word: C-H-R-O-N-I-C. You feel like your loved ones, those that “know”, resent you. They don’t believe you. They think you’re lazy because you don’t do your housework or go shopping etc. anymore. “You’re just lazy.” For me, even my biggest love, quilting, has suffered. I can’t concentrate on it when my mind is full of pain management wishes. I cannot, in good conscience, ask my husband to do things for me that I can no longer do. I feel like he resents me… even though I know he doesn’t. We’ve talked about it. But I cannot shake the feeling.

I recently joined an Osteoarthritis group online on Facebook. Wonderful bunch of people, mostly women, who share their experiences and ideas for pain relief and how to try to live a “normal” life. Exercises, weight loss help, potentials for medications that I haven’t tried. I know in my head that I need to keep moving and exercise or I will end up immobile. They give me hope. Even a chuckle now and then. I know many people scoff at Facebook, but there is so much knowledge there if you know where to look and how to use it. I have been blessed.

What’s my point to this post? Chronic pain. It’s real. It exists for thousands of people, including me. We don’t look for sympathy. We don’t look for an “easy out”. We just want to be acknowledged, understood and respected like everyone else. These days, everything is all about “tolerance”. Quit thinking we’re “fakers” and get with the program.

Unfortunately, I expect very few people will ever seen this post. In a way that’s fine with me, as I’m not too comfortable sharing all this with anyone anyways. Anyone I know. Funny how I’ve put my entire life out here in my blog, some of which is pretty graphic and shocking, but THIS makes me uncomfortable! LOL!

Like this:

Okay, now that I’ve got the title of my newest post down, I scarcely know where to start from here. The past 24 hours have been … “interesting”, to say the least. I’m still running amok with a multitude of emotions, convictions and prayers. At this very moment, I’m determined. But in ten minutes, I may be a fearful bag of tears. Trying NOT to go there!

I think I’ve had my wake up call. Like the drop-dead one of them all ~ besides ever being told that I’m terminal. But I already know that. Yesterday I heard the words “you are riddled with” from an orthopedic specialist of an orthopedic group that I highly respect and trust. I barely heard him say “osteoarthritis in your right foot.” I had gone there by requested referral from my primary care doc to determine what had been the cause of incredible pain in my right foot for about the past year. I’ve been putting it off, thinking it’s only tendonitis and it would go away eventually. Instead, the pain has increased, and I have become accustomed to ignoring it and hiding it (like I do my chronic back pain) until most recently when I realized it’s just too painful to ignore. My ability to walk distances has become extremely compromised, making even grocery shopping difficult at best. Any mall is an absolute nightmare, and I’ve given up on ever seeing the inside of one again. The maximum allowable time limit for me to be able to walk currently is about 15 minutes before my foot “gives out”. After an hour or two of rest off my foot, I can continue again, for about another 15 minutes… maybe.

But, yeah, OA (osteoarthritis) ~ wasn’t expecting THAT one! Since yesterday, my thoughts have been racing. The ortho doc said low impact aerobics, swimming, and ortho shoes/sneakers. Ugggh! Seriously? I’m going to have to change my whole lifestyle for this affliction! Well, yes, I am! There is no cure, only pain management and exercise because weight loss will help. There it is again… that weight loss stuff! That ALWAYS just keeps popping up, doesn’t it?

I had today off from work, and was planning on staying home and doing some sewing/quilting. However, I ended up researching gyms/health clubs locally online that also have a swimming pool ~ AND are relatively affordable. With that, I decided on the YMCA, their North Area location (North Syracuse/Liverpool/Cicero/Clay area), and I drove the 15 miles to take a tour and find out more. Their “open swim” times coincide pretty well with my schedule, but I will need and am willing to make massive changes, including getting up and out the door by 5:00 a.m. each weekday I go, taking everything work-related with me, including breakfast, swimming and working out and then making it to work (30 minutes from the Y) before 8:00 a.m. I have not yet joined, but will talk with the husband about it tonight. Wish he would join with me, but he is NOT willing to change HIS schedule for anyone or anything.

Satisfied with the YMCA tour, I decided to go back to SOS (Syracuse Orthopedic Specialists) as they have a”store” where they sell orthopedic items (shoes, sneakers, socks, braces etc), and I wanted to take a second look at their shoes and sneakers, as I will obviously need to trash all my other non-supportive footwear and get used to buying “ugly” ortho shoes! The fact that I have small feet (size 7), and a high instep should make this interesting. But the SOS store had a wonderful customer service woman who was very attentive and knowledgeable. Of course, all of the shoes were those European sizes (36-37-38 etc), and were created obnoxiously narrow. After about an hour of trying on various shoes/sneakers, and actually meeting with their specialty orthotic shoe person on staff, we were able to come to consensus on a pair of shoes and a pair of sneakers… with added/padded insoles. I wasn’t going to purchase two pairs of anything, because it’s very pricey and made my stomach feel a little sick to see the price tags. But I needed to have something to wear to work, and something more casual. I mean, what woman can get by on ONE PAIR OF SHOES? Seriously! Especially since I knew when I got home I would be trashing all of my current shoes in my closet. No more even looking longingly at a pair of heels.

My new “ortho shoes”.

Okay, so they aren’t “bad” shoes. They kinda look like my MaryJanes I was wearing earlier, but have now tossed in the trash ($3.00 from WalMart). But these new shoes are very comfortable. I was informed it’ll take awhile to get used to them, that is believable. And they should last! After all, I could’ve flown from Syracuse to LA and back on the price of these two pairs. I think I heard my credit card (that I have not used in over a year) cry out in pain as I swiped the card reader at the store. I’ll add a sneaker photo later on.

So, I guess I’m entering a new phase in my life that will affect my entire lifestyle, yet again. I’m back “on the wagon” with my better eating habits, after being on hiatus for a few months – off and on. I so want to make this work! The alternative is just unbearable for me. I will not be immobile. If I don’t lose the weight, that’s exactly where I’m headed – in short time! This is it. This is do or die.

By the way, what about the Relay for Life in June, and the quilt raffle? Yeah, I’m still on board with that all the way. I don’t care what that takes, it’s ON. When I explained to my doc about the upcoming relay, he said there are a few “short term options” we can use to just get me through that event… since I’m “adamantly committed”, he said. So, please keep that in mind when you visit my other blog with the information about the quilt raffle etc. I haven’t gotten to my goal yet…https://tamaraeckstadt.wordpress.com/2014/03/16/quilting-to-crush-cancer/ Help give me some incentive by supporting my Relay. And I am adamantly committed!

So, that’s where I’m at today. I appreciate you stopping by and checking in on me and reading my posts now and then. If anyone has personal experience/knowledge with osteoarthritis, I’d love to hear about your travels down that road. You can email me at tamalecks@yahoo.com. TTFN ~ Tamara Eckstadt

For those of you who do not know what it is like to live with pain, sometimes unbearable pain, 24/7, you may not appreciate what I’m saying here. But I am so excited that I just had to share it!

Yes, I’m “one of those people” who have the handicap of living in pain all of the time. Yes, it is a handicap. Never thought I’d think of it in that way, but believe me, when you’re living it, there’s no other way to think of it. It can direct your life. I don’t have a wheelchair, I don’t have an artificial limb, I’m not blind and I don’t wear a cast… so you can’t SEE my handicap by looking at me.

I have an L5, T5, T6 & T7 herniated discs in my back. Since 1988-1989 I’ve been dealing with on-again/off-again pain until the late 90’s when it became full time on-again. I’ve run the gamut of chiropractors, pain specialists, orthopedic specialists, physical therapy and medications. I have been medicated since 1991. The list of prescription and OTC meds I’ve tried is too long to list… every type, color, size, shape, dosage, co-pay imaginable. Surgery is not an option on this particular location. My latest “thing”, besides continuing medication, is an ultrasound guided epidural cortisone interlaminar block, given in quarterly injections under mild sedation. Most of the time they help take the edge off, but never completely alleviate the pain. So, I continue to also keep getting my medications “adjusted” trying to find the best combination for relief.

The worst for me is bed time. Laying down and trying to go to sleep is an absolute nightmare for which, oftentimes, I end up taking a double dose of meds and crying myself to sleep. The pain of laying down is ferocious! Like Satan is stabbing me in the back with an 11″ dagger over and over. If it begins to subside, it begins anew each time I shift or move to a new position… all night. Only a very few times have I ever gotten full relief from this hell on earth, and that was whenever we’ve stayed in a hotel or a B & B that has a featherbed “topper” on their accommodations. Recently, for Valentine’s Day, we spent the weekend at a local Inn and they had just such a featherbed topper. It wasn’t until we actually checked out and went on about our way that I actually realized that I’d slept comfortably and gotten up without pain! WITHOUT pain! Husband and I finally began to put some pieces together and decided it was either a new mattress and/or a featherbed topper for us in our near future!

Well, to make a long story short, we got the featherbed topper online through Amazon, and it was delivered yesterday. We opened it up, fluffed it on top of our mattress (covered it with a sheet as we don’t yet have a “cover” for it), and last night was pure unmedicated heaven! I was able to lay down and, instead of the excruciating pain of my back adjusting to the bed, it was immediate relief! I could roll onto my side – EITHER ONE – and not whimper and feel that stabbing in my back that I’d become accustomed to. When I woke up this morning, there was no pain! None! I could even stretch, for the first time in years, without wincing. I could sit up without a struggle and stand up without assistance of some sort for the first time in decades. And, I was still unmedicated!

Now, I don’t know the “ifs” “whys” and “wherefores” of this miracle in my life, but that 5″ featherbed topper is the best blessing I’ve had … I can’t even tell you! I don’t know how or why it works for me, but it does. Such a simple solution for a comfortable sleep! I do still have constant pain during the day, but it’s much more manageable (most of the time) if I’m careful and conscious about my movements. But the REASON I’m sharing this is to share my unadulterated JOY this morning, not to focus on the unseen handicap of constant pain. I felt so good I had to restrain myself from dancing in my livingroom this morning! But, I digress!

How did YOU sleep last night?

Thanks for stopping by and reading my post. Hope to see you again soon. TTFN ~ Tamara Eckstadt